Hero’s Journey

Recently someone said to me that cancer is viewed as a hero’s journey, meaning that the sorority sisters go through this epic journey with a beginning, middle, and end. There is a big climax and then a resolve. Everything ends, packaged up all nicely with a bow on top and the hero sisters go back to their normal life. But this is simply not true with cancer and I’ve really started to face this reality in the last two weeks.

A cancer diagnosis needs to be viewed more like a heart attack or pulmonary disease. Once diagnosed, a sister’s life changes forever. Physically, we poison our bodies with chemotherapy, immunotherapy, endocrine therapy, radiation, and amputations of body parts. There are long-lasting side effects, some forever. There are scans and follow-ups, forever. Often, we are put on medication for years; post-active treatment to prevent the cancer from returning. Our bodies are changed forever and there is no going back to before or “normal.”

We have to face a new normal, which is emotionally draining and taxing. Things that were once important no longer seem so. Things we put aside are now massively important. What we thought were our life plans, goals, and dreams have now all changed. It’s confusing and difficult to navigate. It stirs up all these emotions of “now what?” and “where do I go from here?” “How do I navigate the world after all this trauma inflicted on my body so I can survive?”

These are the emotions I started to have with my last cycle of chemotherapy. My oncology therapist Kevin said to view the future like a math problem, where I don’t have all the numbers yet to solve the problem. I can sit around all day long and put whatever numbers I want in to the blank spaces, but I still won’t know for sure the answer. It’s just speculation and unknowns. It’s one of the hardest things to accept: that I simply don’t know what will happen and I can’t control it.

On top of all the emotions the last cycle brought up, it was also a very rough cycle physically. I had increased pain in my affected breast. That pain coupled with a resurgence of Glenda—the gastric ulcer—made management of that pain very difficult. Ibuprofen works best for the pain, but it’s not good for Glenda. That leaves me with few options beyond narcotics, which I don’t enjoy taking because of the stigma associated with them, and it simply does not work as well.

What To Eat

Also with Glenda, I know that I need to watch what I eat and which meds I take to keep her happy. This is difficult, because chemo puts a lot of restrictions on what I can or even want to eat. I have to get 90-100 grams of protein every day to ensure my body is set up for healing. I can’t eat hard foods, because it will increase my risk of mouth sores. A lot of the time I have to use plastic silverware, as metal leaves a metallic taste in my mouth. Some days nothing sounds good, but I can hear my stomach growling; other days I want to eat everything in the house and them some. It’s been very complicated and difficult to manage. Oncology says to just eat what sounds good, because it’s important to get my calories in for healing. The voice in the back of my head fights that and says I have to eat as healthy as possible. Reality is: I keep a gold star chart to manage my water, protein and exercise goals. I have a protein smoothie with three servings of fruits and vegetables in it every morning. I do my best to get my protein through meals, but I often have to supplement with an Ensure. I make plans for every meal and have healthy snacks in the house. Some days I do great following it, others it’s poptarts and oreos for dinner. It’s all about trying and giving myself grace when I fail. Just getting back on the wagon every new day and doing my best. Plus, oreos are vegan so they must be healthy right?

Even More Side Effects

Another issue that got worse on this last cycle was my facial redness. Like I said before, it could be the toxins trying to leave my body. Oncology told me this week it’s also a very common side effect from the Taxol chemo. Either way, it got worse and the hydrocortisone cream over the counter was barely touching it. Dr. Wells called in a prescription cream that will hopefully give more relief.

There’s also worsening neuropathy in my feet. It’s a strange neuropathy that affects my heels. I feel like I’ve been walking miles and just took my shoes off after the long day. My heels ache and sometimes burn. It’s very weird. Massage and pressure help so I try to wear shoes or slippers all the time, but bed time is rough. I hate wearing socks to bed, but then I have to deal with the pain if I don’t. For now, it’s a side effect we will just watch and should go away after I’m done with chemo as long as it doesn’t worsen.

Getting the Help I Need

All of those new and worsening issues coupled with the influx of emotions, it was a really rough week. Being the terrible nurse patient I am, I put off reaching out to oncology about those issues for too long. I thought I could manage them, they weren’t as bad some patients have and thus not a big deal. It was really dumb and took some gentle pushing/support from my breasties and Mitch to finally listen to my body and tell Oncology all my side effects. Luckily I have the most amazing oncology team and they were so gentle with my idiocy. They helped me to not feel bad about needing stronger pain meds and to continue eating what I can. They applauded my efforts to get my protein and water.

Oncology had me go see a gastroenterologist for Glenda and the heartburn and bloating I’ve had for a bit. That visit with Midwest GI earned me an upper scope to look at my upper GI tract including my esophagus and stomach to look for ulcers/issues. This will happen July 14th, under a light sedation at Methodist. At the same time, GI will also do an internal ultrasound of my pancreas to make sure it looks good, as my BRCA 2 status increases my risk of pancreatic cancer. Then in August, I will have a colonoscopy to see if there is a reason I get bloated so easily. Here I thought I would have fun with my time off between chemo and surgery!

With the other side effects not GI-related, oncology will continue to monitor the weird neuropathy and said it shouldn’t be a long term effect. I’ll continue seeing Kevin, the oncology therapist, weekly until I can get in with a trauma specialist in August. Honestly though, I may see both because I’ve met that out-of-pocket max with insurance, so why not get my mind as totally right as I can now? Healing and self care is cool y’all!

The Good Stuff

Even with the rough week of emotions and side effects, I did have some energy and time to see friends and family. I was able to have lunch with my grandma last Friday, the 25th. Monday I spent a few hours with my friends and their 6-month-old baby. Another friend stopped by for an hour or so to just check in, which was nice. I was able to have lunch at a sorority sister’s place on Wednesday, where she gave me ad old wig she had used and two cap wigs, on top of great conversation and support. These visits (while sometimes short due to my energy levels) make a huge positive impact on my mental health and keep me going. It still amazes me I have so many people who love and care about me so much that they make this much effort and time for me.

Thursday I had chemo and Mitch took me so he could listen in/encourage me to be totally honest with Dr. Wells. Then my grandma picked me up and we had lunch together. I came home and snagged a quick nap, then we went to my in-law’s house for dinner, as Mitch’s aunt and cousin were in town from Arkansas. It was nice to see them and we had a great time catching up.

Billing Issues

Friday morning was spent on the phone with both Methodist and the Med Center sorting out some billing issues. Methodist has been billing the wrong insurance since April. This is the third time I’ve reached out to them about this issue. I’m not sure where the break down happened as the access center has said for months they have the right insurance on file, but today billing told me they had on file that my insurance didn’t switch until July 1st, which isn’t factual information. That’s a whole mess they will have to deal with by resubmitting a lot of claims to the right people if they want to get paid.

Meanwhile, the Med Center has royally dropped the ball with my financial assistance application. My first application was closed, because they said they never got the supporting documentation I had emailed them in May. In early June, I got a massive bill from them and called asking about my financial assistance application, upon which I learned they lost the email. I stayed on the phone that time to ensure she got the email with the information and she did. Yesterday I got a letter stating they still did not have our tax returns and wanted more information on why I didn’t include our Go Fund Me account in the income section. I called them asking how they lost only the tax return (as it was all in the same documentation email sent in both May and June) and apologized for not including the Go Fund Me. I didn’t realize it counted as income, because it doesn’t count on taxes and there was no specific place on the application where they asked for donations received. I’m supposed to be getting a return call from them after they search for the tax returns and find out what information they want about our Go Fund Me. Let’s just say I’m not expecting the call back and will have to follow up later this week.

Such Progress

I wrote the above section of this post on Friday morning, but my copy editor had been busy and didn’t get time to edit it. (Give him some love in the comments. Mitch is truly amazing and the best caregiver ever.) His delay means good news for you though as now you do get that beautiful happy ending everyone craves, as things have been going really well this cycle with all the changes made to manage the side effects.

On Friday after my billion calls with the billing issues, I was able to go have lunch with a friend I went to nursing school with. It’s always fun for me to hear about hospital life and be able to connect to a part of me I’m not seeing right now. I’m always willing to talk/hear medical!

Friday night though is when the goodness and light came shinning bright into my life. I was having pain but taking the pain medication as prescribed, coupled with the new steroid lotion and Protoxin from GI left me waking up feeling well rested and better on chemo than I have this whole time. It’s been a night and day difference this cycle, compared to the last and I’m just grateful I had those pushes from special people in my life to get the help I needed. It’s a terrible super power I have that I can ignore such pain and discomfort for so long, but now that I know what good feels like I’ll do whatever it takes to not go back!

Yesterday (Saturday) I woke up feeling great again, because I actually got a full night’s sleep so we headed out to Columbus to see my sister and brother. I was excited because I felt so good I was able to drive all the way out there. It was so nice to have my sister’s delicious home-cooked meal and spend time away from cancer headquarters. After that I passed out on the way back to Omaha. We stopped by Mitch’s parent’s to say goodbye to his Aunt and cousin, and then headed home where I promptly fell asleep quite quickly from all the excitement and fun had over the last few days.

Speaking of fun and excitement, we have a special house guest by the name of Phillip J Frye (or Frye for short). He is our friend’s Cavalier King Charles so we are officially for the time being a house of small, medium, and large when it comes to dogs. Frye is an extra special guy and blind in one eye from a scratched cornea (when he was a puppy with his litter), so he’s a bit skiddish and shy when it comes to new people. This just pulls at my heart strings and I baby the heck out of him. He loves it and it gives me some added purpose right now, beyond surviving the immediate threats cancer has thrown my way.

4th of July

Now today, the 4th of July, I had to be sure to not over do it and schedule in time for rest, like my car nap yesterday. We didn’t have any big plans today, so it wasn’t too bad. I feel miles better than last week with a good working plan in place for the immediate side effects, and want to keep that going so easy does it today.

Meanwhile I’ll remember the missing numbers for the cancer math problem; it will come with time and I have to just remind myself of that when the anxiety gets the best of me. I will navigate this forever, but this week has shown me I have the right tools and support system in place to be able to face this as long as I’m honest and open with myself, my support, and doctors. It’s amazing what can be accomplished and how much life improves when surrounded by love, support and honesty. Thank you warriors for ensuring I feel and have this love and light in my life.